Dim The Lights, The Results Are In

If you know my kids, you know they have relatively weak immune systems (It is my little superheroes' kryptonite)

   

 

Ryder has been seeing an allergist and immunologist at Children’s since January 2011.  We first took him because he was ALWAYS sick, specifically with ear infections and chest congestion. After blood work, we discovered (I think to both my surprise and to my doctor’s surprise) that he had a Compliment Protein Deficiency.  What is that you ask? Well, here is a brief and broad description:

The complement system is part of the innate immune system. The complement system plays an important part in defense against pyogenic organisms. It promotes the inflammatory response, eliminates pathogens, and enhances the immune response. Deficiencies in the complement cascade can lead to infection. In addition to playing an important role in host defense against infection, the complement system is a mediator in both the pathogenesis and prevention of immune complex diseases, such as systemic lupus erythematosus (SLE). These findings underscore the duality of the complement system. It has a protective effect when functioning in moderation against pathogens; at the same time, the inflammation promoted by complement activation can result in cellular damage when not kept in check. The complement cascade consists of 3 separate pathways that converge in a final common pathway. The pathways include the classical pathway (C1qrs, C2, C4), the alternative pathway (C3, factor B, properdin), and the lectin pathway (mannan-binding lectin [MBL]). The classical pathway is triggered by interaction of the Fc portion of an antibody (immunoglobulin [Ig] M, IgG1, IgG2, IgG3) or C-reactive protein with C1q. (Chaganti)

Ryder showed a deficiency in the Classical Pathways of his Complement Proteins.  I honestly am not sure how deficient; I do remember Dr. Hains saying he had less than half of what was normal.  Basically, a deficiency in this area can lead to multiple infections that are recurrent, and can even include the development of Lupus and high susceptibility to meningitis depending on what areas are deficient.  When Ryder was retested to see where he was specifically deficient (there are apparently 9 divisions of the Classical Pathways), we thankfully had good news.  His test came back with much higher numbers, which put him in the very low range of what could be considered normal concerning his Complement Protein. 

How did this change? I have no clue (prayer maybe?), especially since I understood it to be something his body was simply missing, but whatever it was, I was glad it was a much better outcome than we originally thought.  He was placed on a year and a half regimen of a prophylactic antibiotic, just to help him fight the infections his immune system was not strong enough to fight by itself.  A year and a half later, I am thrilled to report we have just recently (March) come off of that antibiotic and are hoping he does well enough to stay off (there is a chance he may have to start them again in the fall if he starts getting sick again, since that is the time in the year when sickness increases).  

If this wasn’t fun enough, we added Sawyer in the mix.  (This actually brings me to the relevancy of why I posted this today.) We decided to have his immune system tested as well since he has had so many ear infections and sinus infections this past year, not to mention Ryder’s low immune system. Yesterday (May 22, 2012), we went for the lab results. He had overall a healthy report (like Ryder) but (also like Ryder) had some low or slightly abnormal results (again, nothing too serious).  He also tested in the low average range for his complement proteins.  Apparently this was no huge concern, but was very similar to Ryder’s results the second time he was tested.  It does mean he is more likely to develop ear infections (um, no kidding) and other upper respiratory infections than most kids (the average child in daycare, according to Dr. Hains, makes about 7 trips to the doctor due to basic illnesses in a year.  Kids with Ryder and Sawyer’s immune deficiencies make typically around 15 trips—Great, roll of eyes!)  Somehow, his immune system is just weaker than most.

The other area where Sawyer’s numbers were not normal concerned his pneumococcal titers. (Again, I am no doctor; this is my layman’s terms for all of this. Brad and Allison may laugh at my awkward description of all of this.) Apparently, a titer tells how much immunity someone has built up after getting a vaccine.  Sawyer had no protection against pneumococcal bacteraemia (presence of bacteria in the blood) despite having had his required Prevnar13 vaccines (to date).  Now, this could be because he hasn’t finished all of his vaccines, but Dr. Hains thought it was concerning since he has had at least two vaccines and still has no antibodies. This bacteria, she explained, can be a major cause of ear infections and sinus infections (well that explains a lot!) and Sawyer has no protection against fighting off this when he comes in contact with it. He isn’t making any antibodies against it. When he gets older (over 2) he can have the Pneumovax 23 vaccine (I think that is right).  This will offer him a different type of protection (I honestly don’t know what is different; I just know what I was told). I don’t think it is given to most kids, but since he isn’t responding to the other vaccine, he will need it. I found this when researching this:

“Evaluation of their [their meaning subjects studied concerning the pneumococcal vaccine]response to pneumococcal vaccine can be used as a marker to determine their ability to make antibody specific responses to multiple infectious agents. The failure to make a specific antibody response may be one factor in the susceptibility of these patients to recurrent infections.” (pub.med.gov)

SO, Sawyer, like Ryder will also have to take a year dose of prophylactic antibiotics to help his low immune system (what are the odds?) beginning in August provided he can remain ear infection free until then (currently Sawyer is without an infection and hasn’t had one in about 3 ½ weeks, which is the longest stint we have gone sans ear infection since October.)  

ON TOP OF ALL OF THIS, there was major concern over his weight, which is high 18- low 19 lbs and hasn’t really changed since February.  (The big concern here is that he hasn’t gained, not just that he is simply 19 lbs.) This I have been a bit worried over, especially when I discovered his weight was in the 4^th percentile at his 1 year checkup. I was immediately sent to see a nutritionist; she placed him on two cups of Carnation Instant Breakfast a day, as well as his regular meals and suggested he stop nursing (um, no.)  I honestly think she suggested this because she couldn’t understand why I would still get up to nurse him at night and thought he wanted it because he was hungry. (Just a note, it was the PA and nutritionist, not his main doctor who suggested he stop nursing. His doctor said obviously human milk is made for human babies over cow's milk, but did state that after a year the benefit isn't anything more than simply being a comfort and a healthy drink, not magic potion. And since we don't live in a famine, stopping at 1 year is reasonable.) Sawyer doesn’t really nurse much in the daytime because I am at work, etc.  Therefore, our nursing happens mostly in the evening or at night.  It is tiring at times but I wasn’t complaining. Half the reason he wants it is comfort, and I am okay with that-he is still a baby. And just for good measure, I DO NOT starve him so that he will nurse.  I offer him whole milk all day, he just barely sips it. He has never wanted to drink a bottle, despite what was in it—breast milk or formula or cow milk (so good luck with the Carnation Instant Breakfast)—and despite who gave it to him—daycare workers, me, my mom, other family. That has driven me to keep nursing him, especially since he doesn’t take in the recommended 24 ounces of milk a day. However, I don’t see how taking away extra calories will help. He just isn’t a vigorous eater.  Anyway, to help his appetite, (he does eat okay, he just doesn’t always seem interested) the doctor put him on an appetite stimulant to try and encourage him to eat more.  (Honestly, that surprised me a bit.) But maybe this will help him eat more and get his weight up some. 

SO, there you go, a 1200 word account of my craziness that is my life as a mom.  I guess I will just expect that my next baby will be the same way. Maybe I should start saving for her (okay, or his) doctor’s visits now!

Sources Referenced:

Chaganti, Krisha, MD. "Complement Deficiencies." Medscape Reference. WebMD LLC. July 9 2009. Web. 23 May 2012. 

Zora, JA, Silk, HJ and Tinkleman, DG. Annals of Allergy. pub.med.gov Apr. 70.4 (1993). 283-88.
          Web.23 May 2012.

A Mother’s Perspective:

Getting out the door to go to church yesterday was no small feat. Now that we live in Southside, we have to drive 35 minutes to get to CCC instead of 5 minutes. We couldn’t be on time before we moved; now, it is next to impossible. Nevertheless, we made it and I am so glad we did. If you are not familiar with Covenant Christian Church, Dr. Rodney Gilmore is the pastor. He is an amazing preacher and teacher, and yesterday he devoted the service to all of the mommies in the congregation.  Instead of trying to act as if he totally understood what being a mother is like, he instead read something that “said it better than [he] could.” It was written from a mom’s perspective to her daughter, who had mentioned to the mother that she was interested in starting a family.  The mom was trying to decide how to explain to her daughter exactly what comes with motherhood.  It isn’t just that sleeping late and free weekends are things of the past, but that a mother’s entire perspective on the world changes after children.  I thought it was well written and it made me think of how my perspective has changed since my kids were born.

 Poop.  I can honestly say that I never thought that in my adult life I would be so comfortable talking about poop in my everyday conversation like I have been since my kids were born.  I joke that I haven’t eaten a meal in almost four years that I didn’t have to take a break to go change a poop or wipe a bottom.  Mothering isn’t for the faint of heart and I am a pro now. My mom will cringe and think I have lost any amount of dainty ladylike qualities I ever possibly possessed when she reads this, but I can change a stinky diaper while eating dinner and never miss a beat! (Trust me, that description could have been tons grosser.) Somehow, when it is your own child, it isn’t that bad. That doesn’t mean I don’t think poop and puke are gross, but a mother can totally ignore all gross bodily functions for her kids well being and comfort.   In my four years of mothering experience, I have had more conversations about spit up and poop consistency than any non mother ever would think of. Sometimes I laugh when I hear myself trying to explain to someone what a diaper I was concerned about looked like. No one cares but me! I get tickled looking at Facebook.  I can spot a good mother from a mile away. I have read more potty related status updates than I can count.  They are always written by an ecstatic mommy who is happy her baby is progressing, reaching milestones.  Non-parents probably hide these offenders from their Wall; other mothers chime in with advice and congratulations.  I used to call my son’s daycare to get a bottom update—almost daily! That is nuts! Ryder battled with extreme cases of diaper rash as a baby, and it would send me over the edge. I would obsess with cream and paste and powder and would regularly send notes with explanations of how to properly apply them to his bottom, like they didn’t know how to put powder on a baby’s butt. I would call daily and say “I am just calling to check on Ryder’s bottom.” That is extreme parenting! One time I was actually relieved when my daycare called to tell me there had been a small fire at the school.  I had seen the caller ID and was frantic his bottom was hurting from diaper rash. Seriously, I know it is crazy, but the thought of him hurting or feeling pain would send me into a tailspin. I have logged numerous hours worrying over this type of thing, and I am comfortable with all gross aspects of parenthood, more than comfortable. I don’t even notice it anymore.  No one could have ever made me understand just how gross parenthood is and how things like poop, puke and applying diaper rash cream become fodder for normal everyday conversations.

Another perspective I truly could not appreciate before children was the worrying mothers do over even the most common childhood sicknesses, let alone major illnesses.  Anyone who knows me knows my kids have had their fair share of ear infections.  That is something else I have become so familiar with since I became a mother.  When I found out I was pregnant, I was scared to tell my mom. She didn’t have a track record for being very excited about the announcement of future grandchildren.  When I would casually mention kids, she would tell me to wait or that I didn’t know what I would be getting myself into.  I totally get that now, but only now, after I became a mother. I don’t think it can be explained adequately to a potential mom BEFORE she has kids.  One thing never explained to me was the stress of childhood illness, and I am not even talking about any serious sickness. Heaven only knows mothers who deal with major or life threatening illness must be completely crazy! I don’t know how they cope. For me, I never knew my kids would have to go to the doctor so much.  That isn’t really something you budget for when thinking of expanding a family. I honestly think that when my kids eventually (hopefully) outgrow all of this childhood sickness stuff, we will feel like we are earning a second income! I spend a ridiculous amount of money on doctor’s visits (not to mention at the pharmacy).  I may win an award for the amount of times I walk through the door.  But I don’t care. I will give every last extra cent I have to take Sawyer to the doctor for that random ear recheck if I even remotely suspect it might make a difference in the way he feels.  I have even resorted to buying my own otoscope so I can check his ears daily myself. I think I missed my calling. I can spot an ear infection and make sure our tubes are okay from a mile away.  I seriously would consider being an ENT if I had my career to do over again.  I now realize that they, whoever they are, don’t call us Dr. Mom for no reason.  A mother’s instincts are amazing when it comes to protecting a child.  I have sensed so many illnesses and infections before they happened. I have a throw up plan that runs as smoothly and efficiently as a military operation.  Because Ryder has always had a runny nose that makes him cough and choke until he throws up, I have experienced my fair share of cleaning up puke (see, we are back to puke).  If I even sense that Ryder is going to be sick, or if he gets sick with a virus, I can engage in Operation Throw Up before Shaun can even realize what has happened. I will strip sheets, place a Chucks pad on his mattress, cover it with a flat sheet, drape an extra sheet over the floor, set extra Chucks, folded sheets and pjs out and get a throw up bucket under his face faster than you can believe.  I never knew I had such a talent for taking care of sick babies.  Staying up all night and losing sleep is no major loss though when it means that I can oversee the comfort of my kids so they can sleep well. It is what a mother does without even thinking about it. It cannot be explained.

Motherhood also causes paranoia.  This paranoia has recently been most notable in my fear of tornadoes. Prior to having babies, I didn’t think much at all about storms. Now, I am obsessed.  On days when tornadoes are likely, I pack my storm bag for the boys. The last major storm we had I went to my parents’ house with my bag, which included a football helmet for Ryder, bicycle helmet for Sawyer, baby Bjorn carrier so that Sawyer wouldn’t be ripped away from me in the hypothetical tornado, Ryder’s kid harness so I would be able to hold on to him if need be and a change of clothes for the boys.  My sister in law even commented to my mom about it and asked when I became so scared of storms. I thought that was so funny. I guess I didn’t realize how I looked to others or that I was all of the sudden asking about storms more than I used to. I didn’t even really classify myself as being scared, just aware.  Before kids, when sirens would go off in the middle of the night, I wouldn’t even always wake up. Now, I force everyone to take cover in the bathtub at the first sight of James Spann. When I think about it, I realize that I became this way after Ryder was born. I can remember that first storm post baby when I thought “Oh my gosh, I have to protect him.” It is so funny how all of the sudden, as a mom, I analyze every danger in a way I never would have before.  Everything is now a death trap to my precious babies,--a perspective on parenting no one ever explained before my kids were born (though my mom said she did try).  

I love my boys. I swear I am not that crazy either, despite how the above blog screams the opposite about me!  After church Sunday, I just thought about what Brother Rodney read and thought how true it was. How my life post-kids could never have been adequately explained to a pre-kid version of myself.  I protect and care for my babies without even knowing it and things I do now and things that are normal for me now are not the things I ever thought of before having children.  But my new norm is wonderful. My life is blessed and I am so grateful to the experience I have had as a mother, even when they drive me nuts and make me paranoid. 

The Magic of the Markers

Have you ever seen Leave it to Beaver, the black and white fifties based sitcom that portrays the wholesome Cleaver family? The show stars Ward, the bread winning father; June, the beautiful and domestic housewife; Wally, the seemingly cool yet sometimes awkward teenager; and “the Beave,” the mischievous and curious little brother. While on the air, this great American fictional family served as a role model for the typical American family to emulate. The show endorsed upright moral principles, loving yet firm parenting skills, and promoted happy, healthy marriages, but times have changed in the forty nine years since the show went off the air. The majority of today’s families are either divorced or consist of single parents, and many children seem to rule the roost with cocky attitudes. However, despite these changes, my family, the Markers, have managed to stay more traditional. I come from a “Cleaveresque” type family; my parents, Mike and Cathy, have been married for forty three years and are more in love today than when they met. While I was growing up, my father worked and provided for my family, while my mother stayed at home to take care of me and my two older brothers. Like the Cleavers, they parented with love and instilled moral values in each of us. They were fair, yet firm when we were children, and have served as the model around which I have molded my adult life. This is not to say, however, that my family is perfect. Though the family dynamics and moral aspects of my childhood may have resembled that of black and white wholesome television, there were some distinct difference between June and Ward and Mike and Cathy. Personality wise, my parents are unique. 

My father is an exceptional man. As a little girl in pigtails, I remember thinking that he was the smartest man I had ever met. Twenty five years later, I still believe that to be true. There is hardly a trivia question he cannot answer, and he is filled to the brim with intriguing, miscellaneous information. He works as a professor at a four year university where he imparts knowledge to others for a living. Do not, however, confuse his studiousness with dullness. He has a one of a kind personality, and it only seems to flourish with time.

Unlike Ward Cleaver, my father does not simply come home from work expecting to find peace and quiet by reading the paper, watching the news, and smoking cigars. My father has personality, and it is that personality that makes him so enjoyable. He is known in my family for his distinct and often hilarious qualities. One is buying in bulk. My father will buy anything in bulk, the more the better. Some of his favorite items to buy in bulk are clothes, especially if they are on sale. One year for Christmas, I received four pairs of overalls, all exactly alike in different colors. A few years later he bought me, my mother, and my sister-in-laws matching candy pink leather jackets (it was bad, I must admit). He decided that since the jackets were on sale and were such a good deal that he would go back to the store to get us the purple and green jackets, purchasing a total of nine altogether (really bad). A few years ago he decided it was time for a new car. He bought three cars in the span of about a month, two just alike. A few years later he purchased my brother’s car when the lease was up, and though he already had two trucks, he later completed his “car lot” with one more truck. That is a grand total of five vehicles. Did I mention my mom doesn’t drive, only him. These are just a few of the items that my father enjoys buying in multiples. It is also only one small aspect that makes him so unique and fun.

Another endearing quality that I love about my father is his love for everything western. Most men go through a mid life crisis when they get older and feel the need to buy a sports car. Not my father; instead, he turned into John Wayne. About five years ago to my mother’s dismay, he converted my old bedroom into a “cowboy room” after I moved out and he became proficient at twirling cap guns (a skill he is teaching my oldest son). He was even known to check the mail in his athletic shorts, western hat, cowboy boots, and gun holster. I think this love for cap guns and cowboys actually comes from his childhood memories of watching westerns on black and white television. And as Cleaveresque as my father may be, I hardly believe that Ward would ever buy a woman’s fashion belt simply because the color of the leather matched his gun holster.

These funny quirks are just the tip of the iceberg. My father is like a one man paparazzi, taking so many pictures that my family automatically poses when he walks in the room in anticipation of the picture that is sure to follow. His picture taking has even resulted in some family squabbles (Christmas Gate 08—but that is an entirely different story!) He has been known to buy candy bars and hide them in my mother’s dishes and even in empty Oat Bran cereal boxes so that others will not eat them. He has the gift of gab and can go on for hours about pretty much any subject, and he enjoys more than anything spending quality time with those he loves. This love is most evident when he is around his children. Despite the fact that I am thirty, have been married for eight years, supported by my husband and have a wonderful job, my father still feels the need to help me financially. He only recently stopped balancing my checkbook (make fun, that’s fine) and still will deposit money into my bank account or give me spending money occasionally. He gives freely to my brothers and our children as well. In fact, he would be a lot richer if he would stop giving all of us his paycheck! We try to convince him this is not necessary, but he does it out of love, not necessity. It is these qualities, along with so many very funny other ones, that make my father such a sweet, loving role model.

My mother is also filled with personality and compassion. I have always hoped to be as caring a mother to my children as she has always been to me. Like June Cleaver, she is an excellent homemaker, and although growing up my mother didn’t vacuum in pearls and heels, she did always have dinner on the table for my family when we arrived home from school each day. Unlike June Cleaver, her decision to stay at home with her family was not simply based on the notion that a woman’s place was in the home. Her role as stay at home mom was the result of an unfortunate eye disease known as retinitis pigmentosa (RP). At the age of thirty two, she began suffering from this genetic disease and has had to learn to cope with narrowing vision while also raising a family. Although she is not completely blind, she is very limited visually, cannot drive, and must be helped when navigating unfamiliar territories. Like June, her attitude is always cheery. She never complains about the often hilarious mishaps she finds herself in due to her RP. In fact, my family loves to get a chuckle from them. When I was younger, she hung a coat over a lady’s head because she could not see her sitting in the chair for which she was aiming. Another time she enthusiastically hugged a maintenance man that she mistook for my husband. At a restaurant, she once forced a lady, whom she thought was her friend, into giving up her box of leftovers only to later spot her actual friend standing in a completely different location. On another occasion, she stood in line at what she thought was the Wal-Mart customer service desk for forty-five minutes only to discover she had mistakenly been standing behind a life-size blow-up of Shrek. She has been known to show up in public wearing mismatched shoes or two different earrings. Despite how disheartening all of these things may sound, and trust me, these are simply a few of the funny stories she has to tell, she still manages to laugh at every funny story and take it in stride.

My mother’s determination and perseverance is like none other. Her outlook on life is always positive and I enjoy all of the time I have ever spent with her. As a teenager, I was excited to start driving so that my mother and I could go shopping by ourselves. Now that I am older, she helps me with my boys, and I confide to her my hopes and dreams and even hang out with her on the weekends. We usually end up laughing so hard when we are together that I swear I almost pee my pants! She is a great Nana, even if sometimes she puts a diaper on backwards or can’t find which end is up on the baby! She is the ultimate mom and friend, though not the type of parental friend that allows a child to run wild. Her abilities are amazing. She manages to keep an orderly house, provide multiple laughs for my family, and maintain loving friendships with her children, all while having fun doing it! She truly is a role model for moms that could give June Cleaver a run for her money. 

June and Ward Cleaver made television history by portraying the “ideal” family. Their contribution to TV history portrayed wholesome moral values, family togetherness, and perfect parenting skills. Based on what the Cleavers stood for, my family is about as close to “perfect” as one could hope for. Obviously, nuclear families do not necessarily equal happy families, and no family is perfect, including mine. My family, like all others, is susceptible to conflicts and clashes, and unlike the Cleavers, not every disagreement in my house can be solved within a timely thirty minutes. Nonetheless, I was lucky enough to grow up in a home where fights were few and far between and love was expressed openly. I can only hope that one day my precious boys will think back to their home life with the same fondness that I feel for mine.